That tweet was a self-elected response to Nikki's Ten True Things. The "rules" state that you have to be nominated for this honor by someone who thinks you're a "brilliant" blogger. Nikki qualifies (naturally) but I'm going to break the rules because I received a specific request to expound upon that tweet.
The story isn't all that exciting, and seems to me to be the kind of thing you might see as a Lifetime made-for-tv movie. I don't watch a lot of those so maybe it's really not. I'll get to the punchline first, and then fill in the gaps. I have (mild) chronic fatigue syndrome. There are lots of things in that sentence that are open to criticism, but that's a whole different story. Now is where we jump back in time.
About eight years ago, at the end of September, I woke up one morning and was very tired. The kind of tired you normally feel if you had pulled an all-nighter and you weren't even "waking up" as much as you were "summoning the energy to start a new day without finishing the last one yet." I thought it was strange, but I was in college, and a bad night's sleep wasn't all that unusual. I chalked it up to the weather or a crick in my neck or bad caf food and muscled through the day. It's strange how well I remember that morning. I remember the complete layout of my room on the first floor of Longden 1 at Knox. My bed was right up against the window and wasn't lofted because I couldn't stand having to climb a ladder every night and every morning. Jared's was lofted, and my desk was below his. His desk for some reason was right next to my bed. It was odd, but then, Jared was kind of odd, and I am kind of odd, so there's that. The weather was still nice: t-shirt and jeans stuff, and our dorm room atmosphere was weird because of a soap opera thing that came to light over the summer.
That's right, it's time for a tangent! I had been dating a girl the previous school year, and that relationship had ended the previous spring. What I found out over the summer break was that she had (apparently) fooled around with my new roommate before we all left for the summer. That made the living conditions somewhat unfortunate, but Jared and I had already committed to living together last spring before any of this came to light, so we headed into the start of our junior year stuck in a perpetually uncomfortable silence. That Fall Term, I was taking Japanese and loving it, some great SoAn (sociology and anthropology) courses, and no CompSci courses. No CompSci was strange (for me anyway), but I never managed to come up with a good explanation for how it might be related to the rest what I'm explaining in this story. And of course, 9/11 had just happened, but again I'm not sure if that's relevant.
There's a part of me that wishes the explanation was that simple. This all might seem like a tangent too, but part of what I'm trying to do with this story is not only leave a record of what happened to me, but some of the things I've thought about to explain what happened to me. I'm intentionally trying to mention things that might not SEEM relevant, but that might somehow explain all this to someone in the future. It's like when you call a plumber because one of your drains is slow, and he spends hours and hours looking for the problem. Right when he gives up, you mention that they were digging across the street the other day, and he says, "why didn't you mention that sooner? Blah blah, technical reasons you don't understand." My point is: Something that doesn't seem relevant to you might be really important to an expert. So this whole story is in part my attempt to leave clues for some future "investigation." There's some part of me that still holds out a bit of hope that whatever is wrong with me might someday have an explanation, and I can't trust my memory to remember the "insignificant" details of the time I was really sick, so I feel the need to document some of them. Obviously there will be selection bias on my part, but it's all I can do.
That morning that I woke up tired didn't seem particularly important at the time. When I woke up the second day feeling even worse, I started to wonder if I might be sick (in some normal way). Meningitis wouldn't be out of the question. I scheduled a clinic visit for the weekend and again plowed through my day in a complete haze. The third day I woke up and felt like I still hadn't slept a wink since the night before that first morning. Every single morning I've woken up since then I've felt the same way. For the sake of completeness (and because it leads back to the "open to criticism" remark I made before) I'll mention that blood tests confirmed it wasn't meningitis, or any other detectable illness. About a week in, I called home to talk to my mom about the situation looking for advice. Since the doctors in Galesburg had already cleared me of everything they could think of diagnostically, we decided it must truly be a lack of good sleep. I tried two or three over the counter sleep aids like Tylenol PM with the only noticeable result being heavy grogginess on top of the fatigue. Our eventual conclusion was that I'd have to tough it out for the term and see some specialists over the long winter break (Knox works on 3 ten-week terms so students are off from Thanksgiving to New Years).
Somehow I managed to continue to drag myself to lectures and stare at homework for another 8 weeks. I would have flunked out of my classes if it hadn't been for the incredible grace of my professors. Collectively they showed an amount of compassion I don't think I was in a fit enough state of mind at the time to truly appreciate. My professor very generously didn't fail me out of either of my SoAn classes despite my complete inability to turn in the final papers for either one. Something I still find odd is that I completely excelled at Japanese. It came so naturally to me, and I can hardly remember any of it now. I think I aced that class with a near perfect final grade.
I was thankful when that term was over and I could finally figure out what the hell was wrong with me. My memory starts failing me at this point, because I can only remember vague parts of trips to Delnor, Schaumburg and other remote locales to see different specialists. I saw a neurologist for brain scans, a cardiologist for EKGs, stress tests and sonograms of my heart, a gastroenterologist to see if I wasn't processing food right, and a pain specialist who thought that my whole problem was depression. The pain specialist put me on an anti-depressant that only gave me side effects and no changes in mood. This was probably because the depression was a result of not being able to get out of bed, or think straight, or drive, or hold a job, or function in any meaningful way. Douchebag.
I even saw was a sleep therapist, following up on the idea that maybe I just wasn't getting a restful night's sleep. This was a doctor who works with people that are likely to stop breathing in their sleep for no apparent reason and die (sleep apnea) -- stuff like that. He ordered a sleep study for me, which means you get to sleep in a hospital room with a bazillion wires hooked up to your scalp and body. If that sounds uncomfortable, that's because it is and I can't imagine how they could ever get useful information from a setup like that. No normal person can sleep a "representative night's sleep" under those conditions. I even noted that on my "exit survey," and the doctor was kind enough to completely ignore it. Jackass. It was the incredible incompetence of these numerous and varied "professionals" that completely eroded my faith in western medicine.
The only weird thing I learned from the graphs and technician notes that were produced from the sleep study is that apparently I can go from a completely awake state to REM sleep in under five minutes. Even the sleep specialist himself thought this was, in his words, "unusual," but had no explanation for it and no suggestions for what it might mean. Falling into deep sleep that fast is, to say the least, slightly remarkable since normal people require something like 30 to 90 minutes to get down into that stage. I don't have any concrete conclusions to reach from this single piece of information, but it's not a huge leap to read those results as me just being not that far away from "asleep" even when I'm awake.
When I'd been through a dozen different very specialized areas of medicine, and been told by every single one of them that I was the most healthy 21 year old they had ever seen, my family and I were pretty much facing the conclusion that I was either crazy, or faking it. There was no medical evidence that there was anything at all wrong with me, and no way I could prove my symptoms were real to anyone. I'm not going to compare this syndrome with cancer or anything, but there is an incredibly cruel element to chronic fatigue. It's diagnosed by exclusion, so if all the tests come back clean and you feel tired, the professionals give up and say you have CFS. The problem with not having any perceptible symptoms is that there is nothing to evoke sympathy or even understanding from others.
Thankfully during the time when the CFS was at its worst, my brain was in survival mode and shut down most of my ability to remember, so I can't recall the number of times people called me lazy and told me to buck up, get off my ass, and just try harder. I guess I should be thankful for that. The downside is that I don't remember a lot of the time when I was falling (back) in love with my wife. In fact, I don't remember a lot of things any more. My impression is that my body sacrificed those parts of my brain for the parts that were critical to day-to-day functions, but I have nothing to substantiate this. All I can tell you is that I don't remember lots of things (still don't today) and that's either something inherent in my genes, or this wonderful disease of mine.
At the end of my six week winter break, I was completely consumed by deep, raw fatigue. I knew I'd never make it through two more back to back terms at Knox, and with a lot of help from my mom, I managed to secure a leave of absence from school. They pretty much just put everything on hold for me-- tuition, grades, everything. At the time, we did this only for the Winter Term, because everyone still held out hope that I'd be "fixed" in time to go back to Knox for Spring Term. As March rolled around though, no progress had been made. I still made the trip down to Knox after the one week Spring Break in between terms, but it was to pick up all of my belongings that had been sitting in my dorm room for the past 16 weeks and bring them home. I remember a part of that trip: Jared had stuffed everything of mine into my closet-- including my sheets, and had pushed my bed and his together so he could sleep with his new girlfriend in "our" room.
I remember feeling so defeated that whole day. I had no choice but to give up on what felt like my entire life. It was easy to feel completely beaten because my body was a wreck and couldn't sustain any activity for long anyway. When you're that tired, it's the most natural thing in the world to give up. At the time, I didn't realize how much I was going to be losing, because it would be another two years before I was well enough to return to Knox and finish my degree. By that time, everyone I had befriended-- all of the best friends I had in my whole life-- would have graduated and left the school. When I finally did go back, my final two years at Knox would have been bitterly spent in complete and utter isolation from everyone and everything if it hadn't been for the efforts of my brother. Doug was accepted to Knox during the two years I spent at home sick. It was his efforts to drag me from my single room (I was done with roommates by then) and out into the campus life that kept me from being a complete hermit. Even with that, I will always hate this disease for stealing those last two years at Knox from me. Everything else that's happened since then I can live with, and has even been for the best (like hooking up with Jenn during those two years home sick). I loved so many of those friends I made and I never even had a chance to say a proper goodbye to any of them when I got sick. Since I didn't even have the energy to stay in touch with most of them, from their perspective I pretty much just disappeared.
I have to skip back though, and tie up the last loose end. After about a year and a half spent at home, in my room every day, awake for 8 hours and asleep for 16, a friend of my mom's recommended taking me to see a naprapath named Gene Ridley who worked out of a small office downtown in Chicago. Essentially a cross between a chiropractor and a holistic healer, Dr. Ridley somehow managed to use a combination of teas, honey, sea salt and other various herbal remedies to restore in me a certain amount of stamina. Being a computer programmer, I believe in a universe that is governed by systems and rules, even if we humans don't necessarily understand them. The force and effects of gravity are a handy example: things move and behave according to a set of laws in a predictable and measurable way. Chemistry is another good example: if you combine certain elements in a such a fashion and in the right proportions, a new product is made, and is made consistently every time the procedure is followed. Fixed inputs produce fixed results, and the mechanisms at work can be defined and understood. My point in this side trip is that while I believe there must be some underlying mechanism governing how Dr. Ridley was able to diagnose what remedies would be effective, I don't at all pretend to understand how his diagnostic methods accomplished it. What I can tell you though, is that I have more faith in that man to help people than a traditional "western medicine" doctor. My faith in what Americans think of as "medicine" was completely destroyed by a dozen "experts" completely failing to have any freaking clue what was wrong with me, and the only thing I'll trust them for now is to set broken bones in casts and perform CPR if my heart stops.
What Dr. Ridley was able to divine from his inscrutable tests on me was that there was an overgrowth of yeast in my digestive system. I have no way of knowing if what I'm about to explain is medically accurate, but this is what he explained to me: Your intestines are lined with both bacteria and with yeast, normally in somewhat equal proportions. Both are supposed to be there, and there is normally a peaceful coexistence between the two. Neither has the ability to affect the other: the bacteria can't kill off the yeast, and the yeast can't kill off the bacteria. If however, you are prone to sinus infections, as I was during high school and the first parts of college, and if your doctor prescribes particularly potent antibiotics in order to deal with said sinus infections, a very real side effect of those antibiotics is to kill off not only the unwanted foreign bacteria, but also the healthy and necessary naturally occurring bacteria. If this happens drastically enough, the yeast that normally just cohabitates with bacteria in your intestines can overgrow and fill in the space where the recently killed bacteria used to live. Yeast has some interesting properties when it comes to what it feeds on. Specifically, it eats simple sugar molecules, which also happens to be the single form of energy your brain can process. Dr. Ridley's theory is that essentially what was happening inside of me was that the yeast was literally eating the food I consumed before my body or my brain was able to get any of the nutrients out of it. Once that basic food processing system breaks down, he also believed it could lead to cascading system failures where an imbalance in one system would cause other related organs to misbehave as well. If left unchecked for long enough, just about every critical system in your body could become highly dysfunctional. By the time I found Dr. Ridley, enough was "going wrong" inside me that the damage would have to be repaired and undone one system at a time.
Being a holistic healer, Dr. Ridley's "prescriptions" consisted entirely of organic and homeopathic remedies. His weekly tests would (somehow) allow him to determine which internal system in my body was weakest and in the most need of support, and he would provide the supplement or remedy that was designed to allow that particular organ time to recover. The net result was that there were many different stages to my treatment. Without question the most pleasant of them was eating spoonfuls of truly raw (completely unprocessed) honey multiple times a day. The theory there is that since yeast can only process simple (short) sugar molecules, the complex carbohydrate chains found in raw honey would give my body a chance to get some of that energy to my brain before the yeast consumed it all. The less-pleasant remedies included some of the most foul-tasting tea I've ever had the opportunity to consume, unprocessed animal organs in pill form, and even glasses of water mixed with sea-salt. Most of it was pretty hard to stomach, but the net result was enough of a recovery that I'm able to lead what appears to be a pretty normal life at first glance.
If you've talked to me at all about my condition (which is probably pretty rare since sharing it never results in any benefit to me) you will have heard me use this description: If I was 100% healthy before September of 2001, at my worst I reached maybe 60% stamina, and today I would put myself somewhere between 85 and 90%. I try to remind myself to be thankful for that, because not everyone with chronic fatigue is as lucky as I am. What little research I've cared to do about this syndrome has given me anecdotal evidence that in extreme cases the afflicted can sleep as many as 20 hours out of every day-- waking only long enough to eat and evacuate. I was fortunate to even be able to get out of bed at my worst, and I was downright blessed to be the type of person that is happy sitting at a computer, because that's literally all I had the energy to do. I taught myself the majority of the web programming skills I used to this day while I was home those two years, and I'm thankful every day that I've managed to remember any of it.
Since this is the first of my collection of "true things" about myself, I think it's important to share what it's like to live with this syndrome. I can't tell you if what I'm experiencing is typical for everyone with the syndrome; only that these are things that are different from before I got sick. The single worst part is waking up in the morning. As a mental exercise, I'd like you, dear reader, to imagine one of those fantastic Sunday mornings when you wake up at 11 am after having spent hours upon hours having fantastic sex night before. You fell asleep exhausted and satisfied next to your wonderful mate, and now there's no alarm clock buzzing-- just birds chirping as you slowly realize you're awake and not still dreaming. You feel as comfortable, recharged and energized as you've ever felt in your life, and most importantly, there's a smile on your face because you've got the energy to do whatever you want today.
Now, imagine never feeling that again.
I wake up every day and feel like I haven't slept in 3 days (even though I have). I've felt that way every single morning for the past 8 years, and I've long since given up hope of ever feeling that again for the rest of my life. It's the hardest thing in the world to fight the depression this realization leads so naturally towards. To get up for no other reason than because you know you managed to make it through yesterday and today can't be any different regardless of how awful you feel is a difficult feat to maintain daily. On top of the mental exertion this requires, everything in your body aches, your mind is foggy, and even pushing yourself out of bed feels like the most monumental task you've ever had to face. Today, I woke up and got out of bed because experience told me that I did it yesterday in spite of how I felt, and tomorrow I'll do it again because I somehow managed to do it today. May the gods help me if the day comes when I can't muster that strength.
Everything is a matter of will power now. When I get home, completely drained from nothing more than sitting at my desk in my air-conditioned office all day and I look at the dishes in the sink, it's next to impossible to fight the urge to lay down and instead stand in front of that sink for 10 minutes. CFS changes your perspective on things. "chores" are CHORES now. They're herculean tasks that are going to very quickly sap what little reserves you were saving for something fun.
The weird thing about this is that it changes your motivations. I won't do ANYTHING that I don't absolutely HAVE to do, because I can't afford to waste my energy on anything "trivial." This drives my wife and loved ones nuts, because I'm so much more willing to say no to things that aren't interesting because I know that unless something is fully engaging and interesting to me, I can't stay awake for it. The net effect of this is that I end up looking lazy. I can more naturally summon my resources for the fun things that DO interest me, and I always feel like that makes it appear that I'm happy-go-lucky with no sense of responsibility. I can actually make it a through a whole day at Great America because the natural desire for enjoyment makes it easier to counter the desire to lay down. Helping someone move into a new apartment on a third floor walk up is exponentially more difficult because, not surprisingly, it's a lot less fun. When my body starts screaming to stop, it's harder to ignore because you aren't as pleasantly distracted by the events you're participating in. Ironically, either way I'll pay for the exertion because there are physiological effects to this disease too.
I get physically exhausted incredibly quickly. I can lift heavy things, and I can even help you move into that third floor walk up as well as a 70 year old woman would be able to, but after the first heavy dresser, my hands won't work any more. Once again as an exercise, I'd like you to spend the next 15 minutes repeatedly clenching your fists, then spreading your hands open as wide as they will go. Pretty quickly you'll feel the tendons in your wrist start to get weak, and if you go try to pick up a glass of water, you'll have a hard time holding on. This may take you 2 minutes or 10 minutes or 20 minutes before your muscles are worn out enough to not function any more. For me it takes less than 30 seconds, and what's worse, I won't be able to use my hands again for the rest of the day. My body doesn't recover from exertion as fast as it used to. When I expend energy, exercise and drain my reserves, it takes me MUCH longer to recover than someone that's healthy. I sit a lot more. It's tiring to stand. When I can't sit, I lean.
But by far the most insidious part is the failing memory and always feeling like I'm on the edge of sleep. There are times when I'll be thinking about something I have to do later, either for work, or at home, and later on I won't be able to remember if what I was thinking about was just me thinking about it, or if I had actually done it, because it all feels like a dream. The same is true for the things I actually did yesterday, because even when I was doing them, it's hard to concentrate. I have a hard time distinguishing things that happened yesterday from things that I thought about today and things I actually dreamed about last night. It's pretty surreal actually, but I've kind of given in to it and gotten used to it.
Sleep, ironically enough, is super-important now for "normal" function. My body needs every single minute it can get to recharge as slowly and pathetically as it's able to in order for me to be coherent and productive the next day. The flip side of this is that I've learned to deal with being tired, and the irony is that just like habitual drug use, I've built up a certain tolerance to it now. During the times I exert myself, I can push myself harder than most people because "feeling tired" doesn't really have the same stopping power for me. I have eight years of experience fighting the urge to lay down and rest every minute of every day.
But there's a down side to getting used to always feeling this way too. I've lived with this for so long now that I can't even tell you what "normal" is supposed to feel like any more, and since I have the impression that I've lost so much of my memory it makes it doubly hard to remember a time when I actually DID feel normal. It makes me sad sometimes to think about the ghosts of memories that float on the edge of recall, and it scares the crap out of me to think about something like having a baby that pushes HEALTHY people to the limits of their body's ability to cope with fatigue. Jenn's absolutely dying to have a baby right now, and I can't feel anything but apprehension about the idea because I am afraid of not being able to pull my weight. If we had the money to not have to worry about working for a few months, or to hire a nanny, or if there was some other mechanism in place to fill in for my shortcomings, I wouldn't have the same amount of anxiety about it.
There really isn't an ending to this story. I'm not "fixed," I just am able to cope with my symptoms. My life has been changed by this in both good and (mostly) bad ways. There are things that I'll never be able to do again. I'll probably never be able to keep up with my kids. I probably won't be able to carry or lift them after they weigh more than 30 pounds. I'm gonna spend more than my fair share of the rest of my life asleep. I won't remember the majority of everything that happens around me, and I'm sure I'll forget plenty of things I would have wanted to remember. In spite of a deep desire to do so, I'll probably never excel as much as I might have been able to in my chosen field of expertise (programming) because I can't put the raw energy in that's necessary to do something great. Despite all this, I try to hold out hope that somebody someday will understand this disease. Someday I hope they'll be able to tell me, "why the heck did you drink Coke and eat Sweetarts at the same time? That's what made you sick, dummy!" I can't help but imagine a day when feeling like I weigh twice as much as actually do is finally lifted off of me and years of practice at dealing with that let me spring around like I'm on the moon. I imagine a day when, after having been sick for so long that I've completely forgotten what "healthy" feels like, I'm finally cured and suddenly have more energy than I know what to do with. I try to think of this condition as high-altitude endurance training so you're that much stronger when you get back down to sea level. Or, if you're particularly nerdy, like training in the Gravity Chamber of Goku's ship in Dragon Ball Z.
Of course, I may never fully recover from this, and so I just keep trudging on day after day. I've learned to conceal my weakness for the most part. People don't give you sympathy for running out of steam when everyone else around you is just hitting their stride; what you get is cold looks and frowns. I do my best to not complain, and keep going because I know that in spite of how I feel I usually can persevere. If you're feeling sympathetic though, I can give you some clues to look for that will tip you off to my true state.
- If I'm talking quickly and animatedly, chances are you've gotten me going on something I find so interesting that I'm not thinking about how tired I feel.
- Along the same lines, if you want to keep my attention longer, let me sit down somewhere safe and comfortable so I can spend more energy on paying attention to you and less on staying upright.
- In fact, if we are standing for more than 5 minutes, you will see me start looking for a place to lean or to sit down. If it's past 11 PM and I'm still awake, trust me: I really want to be there. I might look tired, but I'm fighting it like hell for you. If I don't want to be there, I won't hesitate to leave.
- If I "disengage" from the conversation and get really quiet, it's because I've run out of steam and desperately need to recharge soon. (It's probably NOT because you're boring-- it's more likely that I don't have the energy to sustain the effort needed to continue the conversation.)
- If I groan when I stand up, I'm not being melodramatic: it really is that tough and I really am exerting that much effort. If I'm being short and rude with you, it's because I don't think what we're talking about is worth wasting my energy on. (If you push the issue long enough, I'll give up and give you whatever you want. If you're generous, reach a compromise as quickly as possible so I can concentrate on something else.)
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